Saturday, September 29, 2012


Please help support a little girl (Brooklyn) who will be born with a disorder called Heterotaxy on December 17, 2012 by buying a T-shirt. The shirt is purple, and it comes in any size starting with youth small. All proceeds benefit Brooklynthebrave. If you are interested in buying a shirt please contact me (Amanda) @ akdurkin@aol.com. Cost is $15 for adult S-XXL $18 for XXXL and up Youth $10, cash, check or paypal.

Wednesday, September 26, 2012

2nd opinion from Boston

Heard back from Boston a couple minutes ago in an email. This is what was said-
Maggi I have had the opportunity to review the images and it does appear to be a CAVC, DORV with Pulmonary atresia. I was not sure but I do suspect the baby might have anomalous pulmonary venous connections.
Now we need to make decisions and decide what is best for Brooklyn. Please pray we can make the right decision no matter what it is.

Monday, September 24, 2012

                                                                        27 weeks

                                                                           Face
                                                                    Nose and Lips
Had my 27 week appointment today. We got to see some close ups of her. We just love seeing her! 12 more weeks until we get to meet our baby girl <3

Saturday, September 22, 2012

Tuesday September 18

     We decided we wanted to meet with the cardiothoracic surgeon before October 16, so I called Cincinnati Childrens Monday and she scheduled it for the very next day, today!! We were so anxious to speak to Dr. Morales and ask him the list of questions we had compiled for him. Dr. Morales was prepared for us. He first went over the anatomy of Brooklyn's heart and the defects that they have been able to see so far. He drew us pictures of each individual diagnoses. He made sure we understood her diagnoses before he went any farther. He also explained how he has worked with and operated on many children with Heterotaxy when he was at Texas Childrens hospital. He has also done research and publications on Heterotaxy. It is a passion of his and he takes special interest in it. He went on to tell us his plan of care for when Brooklyn comes. He went over her first surgery, will be a shunt, and also talked about the second surgery she would have between 3-9months(bi directional glen), and when she would have her third surgery between 3-5yrs(fontan). He also explained that there are still things we need to see with Brooklyn's heart, and until he feels completely comfortable with the images he has, he will not operate. He wants to be 100% when she goes into her first surgery. He did talk to us about the probability that she will go down to a one ventricle heart. A one ventricle is better than a bad two ventricle. We also talked about the likeliness of her needing a heart transplant between the ages of 15-30yrs old. He was very thorough with us and answered almost all of my questions before I even got to ask. When he finished I did take out my list of questions and he answered every one of them that I asked. We also talked about getting second opinions and he offered his help. He wants us to be completely comfortable with our decision with where Brooklyn's care will be. Dr. Morales PA also shared her story with us. She is 32yrs old and has Heterotaxy. How ironic and amazing to have her standing in front of us and be a part of Brooklyn's team!
     After leaving our meeting with Dr. Morales we are feeling much more confident about staying in Cincinnati and having Brooklyn's care with Dr. Morales. We are still waiting patiently to hear from Boston and get their opinion. Whatever path we are meant to take we will take. All we want is the best for Brooklyn! 

Saturday, September 15, 2012

He is the reason we are heavily considering delivering Brooklyn in Boston and having him and his team be the ones to care for her cardiac issues

Friday, September 14, 2012

september 14th

     I picked up my records from Cincinnati Childrens hospital yesterday and sent them out Fed-Ex today. Now we just have to wait and hear back from Dr.Marx and Dr.Del Nido. The waiting game sucks!!!

september 12th

     I received an e-mail from Dr.Marx this morning. Dr Marx asked me to have Brooklyn's images from her last echo sent to him. He also talked about the probability that I would need to deliver in Boston and this would require me to be there no later than 36 weeks gestation(Nov 26). After reading his e-mail i called Cincinnati Childrens and asked if I could get copies of my fetal echos along with the reports from the Dr.'s.

september 10th

     OB and ultrasound appointment. At 25 weeks gestation Brooklyn weighs in at 1lb 9oz. She is measuring right on track  After my OB appointment Chris and I went to Cincinnati Childrens to meet with Dr. Ware(geneticist).  Dr Ware is well known in the Heterotaxy community for her knowledge and the research that she has done and continues to do. After speaking with Dr Ware we decided that after Brooklyn is born we will have the 4 gene heterotaxy panel done to see if they can find any genetic link of why she has heterotaxy. After leaving her office we kept talking about all we knew so far and what all we still needed to figure out about Brooklyn and Heterotaxy. I went to the computer and started doing more research. I stumbled across the Heterotaxy Hope Organization and The Heterotaxy Network on facebook. I put a post on there introducing myself and explaining what issues Brooklyn has in her Heterotaxy diagnosis. Replies started coming in almost immediately. I could not believe I found a site where it is full of mothers with children who share the same diagnosis(Heterotaxy) as Brooklyn. Since finding these two pages i have been connected with some amazing people. I have been able to ask questions receive input, and get advice from people who understand Heterotaxy first hand. I have only been a part of this community for a few days, but they already feel like family. After listening to other stories of children with heterotaxy and hearing about where they had their care at, we decided we wanted to see if we could get a second opinion from Dr. Del Nido. After speaking more with a wonderful group of moms who have Heterotaxy children themselves, I  sent out e-mails to Dr. Del Nido(CT surgeon) and Dr. Marx(cardiologist) on Sept 11.

september 4th


     Today was our second echo after about an hour of imaging the sonographer went to turn in her report to the team of cardiologists. After waiting a short time Dr. Heydarian (cardiologist) came in to speak with us. She began to draw images on a dry-erase board of what is going on with Brooklyns' heart. She told us how they see another hole in her atrium(asd).With the other hole found in her heart from a previous echo she was now diagnosed with AV canal defect. She went on to tell us that they do not see where her pulmonary artery is connected to her right ventricle. This diagnosed Brooklyn with pulmonary atresia, which will now be Brooklyn's biggest concern. This diagnosis requires Brooklyn to start on prostaglandins immediately after birth to keep the DA(ductus arteriosis) open. The DA is a blood vessel connecting the pulmonary artery to the aortic arch. It allows most of the blood from the RV(right ventricle) to bypass the fetus' fluid filled non functioning lungs. The DA starts to close immediately after birth but for Brooklyn we need it to stay open. This is where the prostaglandins come in. Keeping the DA open is Brooklyn's LIFELINE until she can undergo open heart surgery. At this point we are not sure of exactly how many or what surgeries she will need to have. Once she arrives they will do an echo, chest x-ray, abdominal x-ray and an MRI to get better images of exactly what is going on with her. Dr. Heydarian predicted that the first surgery Brooklyn would undergo would be a "shunt" from her Aorta to her pulmonary artery. Once again we left the Dr's. office sad and overwhelmed  Yet again we were told of  more issues our daughter has and what a tough she road will face after birth.
  We scheduled our next echo for 10/16. We would then have a meeting with Dr. Morales(cardiothoracic surgeon) and also tour the CICU.  All i could do now is research and find out as much as i could about Brooklyns' diagnosis to prepare us for what is to come.
   Through my research I kept coming across the name of a surgeon at Boston Childrens Hospital, Dr. Pedro Del Nido and he is the #1 pediatric cardiac surgeon and he is also #1 for  Heterotaxy.  Boston Childrens Hospital is also  the #1 hospital for Heterotaxy. This really peaked our interest.

august 24th


     Finally, today is our team meeting!!!! We first met with a nurse from the fetal care center of Cincinnati, then a social worker, then a geneticist from Cincinnati Childrens. We then waited while everyone gathered in the conference room and prepared for our meeting. When we went into into the room we sat at a huge round table and all of the Dr's. began to introduce themselves. We met Dr. Lim  from general surgery, Dr. Kelly from neonatology,  Dr. Michelfelder from cardiology, and Dr. Hopkins from genetics. There were also a few familiar faces in the room Judy(our coordinator from UC and Cincinnati Childrens)was the there along with Dr.Jaekle (my OB).  Dr. Lim(general surgeon) began the meeting. He pulled up the images from the fetal MRI on a projection screen. As he scrolled through the images Chris and I saw the most amazing image of Brooklyn. You could actually see her whole profile, every little bone in her fingers, toes, and spine. It was truly amazing. Dr. lim showed us the images of her heart where we could actually see with our own eyes how the apex of her heart points to the right, we could also see on an image how her liver sat transverse in her body.  They showed the gallbladder on her left and they showed where the spleen should be and how there is not one that can be seen. He also showed us an image where you can only see meconium on her left side. He told us this is why he believed her bowels may be rotated. He then passed it off to Dr. Michelfelder.
    Dr. Michelfelder started off by telling us that that Brooklyns' most concerning issues are her cardiac issues. He told us they still needed to see her pulmonary side which they have not been able to see so far, being able to see this would help give a better understanding of what is else may be going on with her heart and what treatment she will require after birth.
     Dr. Kelly from neonatology also spoke for a brief minute telling us they would be in the delivery room, and would do all they can for Brooklyn, and be as prepared as they could be for her when she arrives.
     Dr. Hopkins also spoke and told us how there is a cardiac geneticist that specializes in Heterotaxy. We told him we would be interested in meeting with her.
     After about 2 hours we concluded our meeting. We left there feeling like we had a plan and had a team that was following Brooklyn and preparing for her arrival. This was a good feeling for us.

august 21st

        Today is the fetal MRI. Our appointment is at 8:30 a.m. We arrived promptly, got registered, and waited for them to call me back. After doing a quick weight, height, and blood pressure check i was ready for the MRI. Last time I had one done was about 4-5 years ago and i never remember it being as loud as this one was. I had her turn the music way up but i could still hear all the knocks, pings, and dings.At one point i counted the series of beeps. 150!!! and that was 2 sets into the series. When it binged really loud for an extended period i could feel Brooklyn moving like crazy. At one point she came over the headphones and said "ok, i'm gonna chase the baby now" i remember chuckling to myself. After about an hour and a half we were all finished and she told me that I would get results in about 24 hours. About 4 hours later the nurse from Cincinnati Children's fetal care center called and gave me the news. Brooklyns' gallbladder is on the left, her stomach is on the left, her liver sits transverse in her body, and they suspect that her bowels are malrotated. I asked her about the spleen and she said they can not definitively say she does not have one but they have yet to see one. She went on to tell me that they wanted to have a team meeting on 8/24 so we could go over all information so far and meet with the Dr's. and surgeons. My heart just dropped! I was in the middle of the grocery store trying to keep it together as i was being told all the new issues they had discovered with Brooklyn. I just couldn't believe that my little girl has so much going on with her. Over the next couple of days we tried to do research and prepare ourselves for the team meeting. We put together a binder for Brooklyn and got all of our questions ready. Now we had to just wait until Friday!!!

august 13th


   Today is our first official Dr appointment at the fetal care center. We are scheduled for a OB appointment and a ultrasound plus we are getting the rest of the results back from the amnio. As I was in the waiting room I received a call from children's Cincinnati and was told I had been referred to their fetal care center for evaluation. The nurse called us back to get a BP and weight check and ask if I was having any issues with the pregnancy. She then took us in the room to have the ultrasound done. Brooklyn weighed in at 1lb and was measuring right on track. This was good news! When Dr.Van Hook came in he gave us the amnio results and they were normal. No genetic defects were found. This was even better news!! We were so happy to get some form of good news. Dr.Van Hook said the he wanted me to have a fetal MRI done, so Judy scheduled it at Cincinnati Childrens for 8/21. Our next visit to the OB would be 9/10 and i would then start going on a weekly basis. It was a great feeling to leave this appointment with a smile on our faces and not having been told any more bad news for a change.

august 8th


     Today we had our first fetal echo at Cincinnati Childrens hospital . After they were done with the echo we into into a room for a consultation with a cardiologist. He gave us a picture of a normal heart and a picture of a heart  with DORV(double outlet right ventricle) with sub pulmonary VSD. He told us that was his diagnosis for Brooklyn. He went on to explain that this would require surgery within 1-3 days after delivery. Hearing this news was heart wrenching to us!! No words could come out of my mouth. I now knew that my baby girl would be going directly to children's CICU(cardiac intensive care unit) after she is delivered.
     After the echo consultation we had to go to the fetal care center where i receive my high risk pregnancy care to do a microarray sample, I checked in at the desk and turned to find a seat when Judy came around the corner and asked how the echo had gone. I just lost it, i was nothing but tears. Judy took Chris and I into a back room so we could let it all out and talk to her about what we had just learned at the fetal echo. She also gave us the tubes for the saliva sample for the micro array sample.
     We finished up with Judy and left the Dr.'s office yet again feeling saddened, overwhelmed, and completely lost like the other times we had an appointment and recieved more bad news. Over the next couple of days Chris and I moved out of the house we were renting with our 3 kids. My boys and i came to my mothers and Chris and his daughter went to his brother's house. We felt this was the only way to be able to save money for all of our expenses that we knew we would soon incur when Brooklyn arrives. It is so hard to live in two different houses, about 15 miles apart. It was hard to split the kids up too.  They all miss each other so much, and talk about when we can all be a family again and live together. Our hope is to all be back under the same roof by the time that Brooklyn is able to come home. Chris and I wish we could see each other everyday but some days that just isn't possible. We are leaning and relying on each other more than ever before. He has been my rock throughout this journey so far and I am so glad to have him by my side. My mom has also been extremely supportive throughout these past few weeks as well. I dont have a vehicle right now and rely on her van to get me to and from my Dr.'s appointments. She has went to work earyl and stayed late so I can get myself and the boys where we need to go. Since July 27, she has been helping in researching what we know is going on with Brooklyn and supporting Chris and I along the way.

Thursday, September 13, 2012

JULY 30TH



     We left the kids with their Uncle Jeremy and Aunt Kristen and headed down to UC to have the amniocentesis done. The amnio went as expected and I went home to take it easy for the next couple of days. For the next 48 hours we awaited the results!! Finally i received a call from Judy, and she told us the quick results (fish test) were inconclusive because maternal cells were mixed in, so further testing would need to be done. She explained that they also wanted us to do a microarray sample

July 27th

     Friday, July 27th we were scheduled for our 18 week anatomy scan. Chris, Olivia, Nate, Logan and I all headed to UC for the appointment. All the the kids were sitting anxiously awaiting to find out if they were going to  have a baby brother or a baby sister.As the tech performed the ultrasound she was telling us that the baby was not opening it's legs so she was going to start filing her report and see if we could get the baby to start moving. The tech came back about ten minutes later and a Dr. followed her in. As the tech started collecting more images on  the baby again the Dr. began to tell us that our baby has Dextrocardia with Situs Inversus. She then began to tell us how the apex of the baby's heart points to the right instead of the left, which makes it dextrocardia. She also explained that with situs inversus other organs can be affected as well, so we would need further testing done.
     The tech then leaned over as i was trying to take it all in and told me " it's a girl!!"   I was filled with so many emotions. I have always wanted a baby girl and i finally got her! Unfortunately i found this out at the exact time i was finding out that she had a heart condition and we needed to undergo further testing to find out more about her. We left the appointment feeling overwhelmed with everything we were told and scared of what this  meant for her and her future.
     I received a call later that day from  Judy, a coordinator that we were hooked up with that would be the liaison to go back and forth between UC and Cincinnati Childrens for us. She informed us we were scheduled for an amniocentesis Monday, July 30th. We spent the weekend camping with our kids and headed out early Monday morning  for the amnio.